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Support Groups Help Alzheimer's Patients, Caregivers Learn From Each Other

When Ruth Waldman's husband was placed in a nursing home a few years after he developed Alzheimer's disease, she would visit him and they'd hold hands and talk.

"I took him home for Christmas Eve and we had a wonderful time — he was as normal as apple pie," she said.

The next day was different.

"We woke up and he was an altogether different man," said Waldman, 81. He pushed her into the oven, bloodying her face. She had to call the police to their home in Cheshire.

She still visits him, but they don't talk like they used to. He stares into space or mumbles very quietly. It saddens her, but she gets a lot of help going to support groups for caregivers of Alzheimer's patients. She goes to three groups, each held once a month.

"I just love going and sitting and listening — I think I have a lot of problems, and I then listen to people and I hear their problems," she said. "I do get an awful lot [from the meetings], and I have learned to cope with it a lot better."

The Connecticut chapter of the national Alzheimer's Association lists100 support groups for caregivers of family members with Alzheimer's and six groups for people who have the disease.

Attendees are on a very uncertain and scary road; they look to each other to find their way.

That means hashing out nitty-gritty details like preparing finances, negotiating nursing home waiting lists, and giving up driver's licenses. They talk about dealing with a spouse's outburst, or how to gently nudge him or her out of the kitchen while preparing dinner. They discuss what might await them as the disease progresses.

At a group for caregivers in Southington, the members trade advice on ways to comfort their spouses. Waldman said that when her husband gets an outlandish idea about something, it's sometimes best to go along with it. "Live in his reality, get through the moment," she said.

At the same meeting, Paul Fanelli of Bristol told the group that their greyhound, Ben, has been invaluable in comforting his wife.

"He was a Class A runner, and he is the most therapeutic animal I have ever seen," he said. "He reaches out to her — he literally reaches out to her."

Alan Petitte, whose wife, Joy, 70, was diagnosed three years ago, attends two groups. One is "a little flowery and soft about the situation" and the other is "more hard core about being realistic." They both help.

"I don't know what I'd do without them," said Petitte, 67, of Simsbury. "I probably would have had to institutionalize her at a time when I wasn't ready, and when she wouldn't have been ready to be institutionalized. You do as much as you can and hope that things slow up and keep adjusting. Life is just a bunch of minor adjustments, and I'm just making a lot more adjustments now."

From the support groups, he found not just moral support but practical advice on dealing with a spouse who is slowly slipping away.

"I get a tremendous sense of relief just being able to, number one, blow off steam, vent my emotions to the other members who are there, and I'm very comfortable doing that because I've been going for a couple years and I know many of them reasonably well," he said. "I get a lot of input back from them. … which equates to support. In other words, I'm not the only guy out there."

The future comes up a lot at the meetings.

"Constantly — that's an ongoing theme," Petitte said. No two cases are exactly the same, but their situations are similar enough that they can use each others' experiences to figure things out.

"We'll talk about things that happen and you say 'Oh, that happened to me two weeks ago' or 'That hasn't happened to me yet,'" he said.

Then there are the support groups for those who actuallyhave Alzheimer's. At a recent meeting in Rocky Hill, an Alzheimer's patient named Bonnie (she didn't want her last name used) talked about her fears of the future — specifically aboutgoing to a nursing home.

"That scares me," she said. "You've got this bracelet, you can't get out, you're locked in. People come running after you. I tell my kids — we've got a barn — I tell my kids 'Lock me in the barn and don't let me out,'" she said. This gets a laugh from the group, but Bonnie was only half-joking.

"It's scary to get old, from what I've seen, and I've seen plenty of patients in the hospital with Alzheimer's and I said 'Not me,' and here, this is the beginning," she said.

"They're in another world, another dimension and you're looking straight at them and I'm thinking 'That can't be what I'm going to be like.'"

Patty O'Brien, the group's moderator, told her that Alzheimer's affects people differently and "not everybody is that person you saw in the hospital."

"I hope not," Bonnie replied. "But I also don't want to be in the nursing home where you can't get out and your family forgets about you because you 'being taken care of.'"

Spreading The Word

At the same meeting was Sid Yudowitch of South Windsor. He's a former information technology worker. He's been on disability for four years, because he could no longer do the tasks required of him at work. At first, the diagnosis was anxiety and depression — like many people, it took a few years after his first symptoms emerged to get an official Alzheimer's diagnosis.

He goes to a couple of support groups. He prefers one held every month in Rocky Hill because the members are younger. At 62, he's the oldest member — most people with the disease are diagnosed after 65 — but still on the young side for Alzheimer's.

"I think there's a really big difference between the younger early onset people and the people who are retired and older," he said. Some, members of the group have young children. The group with older members tends to focus on emotional issues, he said, while the younger group shares advice on more practical matters.

"The group in Rocky Hill, that's a very active discussion," he said. "We're talking about detailed drug trials and different things so there's a difference in what we talk about. It's connected more with people like myself — people who are out and active. I'm driving to New Hampshire in an hour, so I'm still really active. We're doing things."

Wearing a T-shirt with the words "I'm An Alz Activist," Yudowitch talked at the meeting about how his work in educating the public about Alzheimer's. He remembers the difficulty his father had communicating while he was in his 90s and developing dementia.

"He had trouble putting things into words," he said. "The first thing in my mind was that in order to get what I want I would have to communicate effectively."

Soon after learning he hadAlzheimer's, Yudowitch decided to work on his speaking skills and joined Toastmasters. The act of preparing a speech helps him maintain his cognitive skills. Since he developed Alzheimer's, he has had trouble reading from a script and speaking out loud. He has to memorize most of it.

"When you do public speaking you have to organize and do some practicing," he said. "I really enjoy it and I think I'm pretty good at it, and I'm comfortable on stage. You talk about what you know. I've done extensive research on every phase of [Alzheimer's]."

Petitte, of Simsbury, said his wife also goes to a group for Alzheimer's patients. She first went "on a whim" and with a good deal of reluctance. "And she absolutely loved it," he said. "She came out of the room beaming, which is very unusual."

As for him, Petitte said: "It's just being able to express your feelings and have people talk back to you and give their take on what you're saying and knowing you're not alone. Which is tremendous."

For information about times and locations of the meetings, contact the Alzheimer's Association 24 Hour Helpline at 800-272-3900 or visit their website at http://www.alz.org/ct.